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hipec : stopgap chemo

vinaykumar
Posts: 66
Joined: Dec 2012

My dad has  had a reoccurrence in the peritoneum ( detected on september 5 ) which is  2 months after 1st line chemo ended.we have been given hipec appointment for 11th Oct.

The medical oncologist says that stopgap chemo till 11th October will do more harm than good but I am very worried about going without any chemo till that long.

 

Can people who have had hipec share the waiting time they had to go thru and what advise they got for stopgap chemo until hipec ?

For the record I am giving my dad cimetadine and TCM medicines which I hope will hold off any further spread.

A

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

Systemic chemo does not easily reach peritoneal mets, as they have no direct blood supply.  I had no systemic chemo pre-debulking and intraperitoneal chemo.  Had systemic (Folfox) after.

manwithnoname
Posts: 390
Joined: Jun 2012

if you've seen this Vinay; http://www.rense.com/general11/ult.htm

 

We did her 'protocol' had to stop due to surgery but interesting reports from India

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tanstaafl
Posts: 956
Joined: Oct 2010

My wife hasn't had HIPEC but she did manage to kill off the peritoneal rot before her first surgery when she was still chemo naive.  Before that surgery, she had been on ca 17,000 iu D3, 500 mg coQ10, ~900 mg lipoic, osteo k, vitamin C, selenium MSC, citrus pectin, fish oil and a lowcarb diet with coconut oil for the 4 weeks before surgery as well as the high dose cimetidine.  

Before the next surgery, she increased up to 30,000 iu D3, no explicit calcium content, more of the LEF stuff.  She used her low dose tegafur uracil chemo up to  24 hr before her 2nd surgery since tegafur drops out of the blood so fast.  A lot of drs bet against her, but she sure showed them.

Chelsea71
Posts: 1170
Joined: Sep 2012

Steve did 13 Folfiri (9 with avastin).  Four week break prior to Hipec.  The cancer did not spiral out of control during the break.  The systemic chemo was surprising effective against his peritoneal cancer.  After Hipec the surgeon said that he could tell by the way the cancer looked that the Folfiri had done quite a number on it.

 

Chelsea

LivinginNH's picture
LivinginNH
Posts: 1287
Joined: Apr 2010

 

Hey Chels,

I know that you were obviously simply replying to his question about systemic chemo before HIPEC, but since your post seemed more postive than you may have intended (at least to me), I just want him to be aware that like Rick, HIPEC did not help your husband either.  So, I've decided to quote from your csn bio:  "...HIPEC surgery April 13, 2012 at Hospital Maisonneuve Rosemont in Montreal, Quebec. Big operation. Treated very aggressively. Surgeon was hopeful. First Scan following surgery (Aug. 2012) showed numerous liver metastasis". 

And sorry folks, but I have never seen where HIPEC has been successful, although I'll exclude Alice in this statement because I believe her mets were from appendix cancer, which has an overall better success rate according to Dr. Sugarbaker (the inventor of HIPEC).  He actually denied performing Rick's surgery since he stated that colon cancer patients don't express well with HIPEC treatment so he will not perform any more surgeries on colon cancer patients.  If I had a "do-over" in life, I would have now preferred Rick to have had those four months that he spent recovering from surgery to instead have had them spent with his family.  Quality over quantity I suppose would have been the better choice; but as they say, hindsight is 20/20.

Take care all.

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

I had EPIC, which is IP chemo administered after surgery via a belly port.  It uses a different chemo agent than is used in HIPEC.  I had a version of 5FU directly administered into my belly at about 300x the strength you can get with 5FU by IV.  HIPEC is usually mitomycin C or oxaliplatin.

And yes, my cancer was appendiceal in origin.  We'll see how I'm doing in a few days, as I have my next follow-up scan on Thursday (first MRI for this.)  So far, so good at 6 years out from surgery/IP chemo.

Alice

LivinginNH's picture
LivinginNH
Posts: 1287
Joined: Apr 2010

Ah, yes, EPIC, I had asked about that, but the doctor said that it wouldn't help him for some reason.  I still don't understand why since it helped you so much.  It seems to make perfect sense to administer it directly into your belly, but what do I know...   Best wishes for a great scan this week, I'm sure it will be fine.  :)   I'll keep you in my thoughts, and as Roger used to say, "Will be sending sparks your way."  :)

Hugs,

Cyn

vinaykumar
Posts: 66
Joined: Dec 2012

thx for your inputs, my dad shall have HIPEC - MItomycin C and then EPIC for 5 days postoperatively ( maybe with 5 FU).

 

while i understand and appriciate cynthia and chelseas inputs , i am right now focussed on getting rid of tumors in the peritoneal cavity.

 

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Cynthia,

When Steve had Hipec his cancer at that time was contained to his abdominal cavity.  Surface cancer, with the exception of two retro-peritoneal lymph nodes discovered during his first surgery (colectomy-removal of the primary tumor).  I can remember the surgeon saying that this surgery was ideally done when there is only surface cancer.  The surgeon was very aggressive.  He targeted the affected lymph nodes and removed many others as a precaution.  Steve lost the tail of his pancreas, spleen, some small intestine, some abdominal wall, his rectal stump.....big, big surgery.  Clear margins.  Four months later there were tumors in the liver.  Prior to hipec the liver appeared fine.  So, we don't know if it spread there during surgery or if there were seedlings present prior to hipec that were too small to be detected.  Shortly before he died there were small spots on his lungs, as well.  I don't have huge regrets about hipec.  We knew going into it that it was risky and that it would involve a long recovery.  We knew the chances of him being cured were a longshot but we had hoped that such a big surgery would have bought him more time. His cancer did not return to the peritoneal cavity and for this I am grateful.  As we all know, the peritoneal cavity is not the best place to have tumors.  As the tumors grow they cause blockages and really affect ones QOL.  Basically, I am glad that at the end he was suffering from liver metastasis vs. peritoneal spread.  I do regret not having him use cimetidine before and after surgery.  I have really never heard of hipec curing anyone with MCRC.  Appendix cancer is more successfully treated by hipec.  In hindsight would we have done the hipec?  Likely not.  I actually spend a lot of time thinking about what we would have done differently.  Steve's cancer was very very aggressive.  A lot went wrong along the way.  He developed a lot of unusual complications.  I suspect that huge clot that developed by his port that completely blocked his superior vena cava played a big role in his downward spiral.  I think it prevented the chemo from being as effective as it should have been.  It seems like it all went downhill after the clot formed.  Anyways, Steve's anesthesiologist told him that hipec is the roughest surgery a person can have.  (It's nick name is MOAS for mother of all surgeries). It certainly shouldn't be entered into lightly.  As I stated earlier, I have not heard of any cc cures from hipec.  I think it's been proven to extend people's lives by six months to a year.  It takes some people close to a year to fully recover.  Is it worth the risk and brutal recovery?  In my opinion, probably not.

 

Chelsea

 

 

LivinginNH's picture
LivinginNH
Posts: 1287
Joined: Apr 2010

 

Hi,

Yes, I too am very glad that Steve didn't pass from peritoneal spread as Rick did.  And, like you, I have never heard of anyone having success with HIPEC, so I'd really hate for this poster to have his Dad go through it.  I still hold some anger at the surgeon for leading Rick on at how HIPEC would give him an extra five years at least.  Rick had surface cancer only, so the surgeon said that he too was "shocked" when it came back four months later.  If only I knew then what I know now...it's true, hindsight is 20/20.   I so hate this friggin disease.  :(

(Ok, I'll get off my soapbox now, sometimes I just need to vent - especially when I seen the word HIPEC mentioned.)

Take care

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

who had HIPEC and has been NED for a while now, I think 2-3 years.  But he was in his late 20s when he had it done, and in exceptionally good health.  One person out of the many I've seen on the forums who have had this done is a pretty sad "success" rate.

We're just so desperate to live, and the doctors truly do want to save us...it's not surprising that we all try just about anything to survive.  The instinct and will to fight for life is just so strong.

My sister had surgery two months before she died (not HIPEC just tumor debulking).  She spent two weeks of those two months in the hospital instead of at home with her husband and kid.  It wasn't the right decision, but when you're in the heat of the moment, it seems impossible to make the right decision.

I'm so sad for all of us who lost people we loved to this beast.  Although I shouldn't call it that, I guess...that's an insult to beasts everywhere.

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

Hopefully the combo of the two procedures will be effective.  I don't think I've seen anyone else who has had that done on the forums, so keep us posted on how things go.  We're all hoping for great results.

NYMarc
Posts: 1
Joined: Nov 2013

I was diagnosed with Stage 4 Colon Cancer in July 2012, had a total coloectomy with ileostomy and then a HIPEC with reversal in January 2013. I had 11 rounds of Folfox pre-surgery and 7 post. HIPEC was an incredibly tough and painful surgery, but for me it was worth it. So far I am NED and happy I had the surgery. I was back home after 5 days, back at work in 3 weeks and actually went skiing in March.  I think the decision to have a HIPEC should be individual and many people are having the surgery inappropriatly leading to complications. A lot of people have the surgery as a last resort with large amounts of disease and a high PCI score. The surgery is effective, but mostly on people with a lower PCI and people who are in good enough health that they can handle a surgery of this nature. Personally, I would rather have another surgery than have another 6 months of chemo. I believe HIPEC is a good option for the right candidate, but not the miracle cure that some are hoping for.

momscoloncancer
Posts: 2
Joined: Mar 2012

Chelsea,

My mom had HIPEC surgery in July and had her first post op CT scan.  I'm pretty nervous as it showed an ill-defined hypodense lesion on the surface of her liver that wasn't there before.  However, my mom's CEA level has always been an excellent indicator of mestasis and it went down to 1.4 from 2.0 a month before.  Her onco. said that he's not getting overly alarmed at the CT scan results due to most of her organs seem inflamed and irritated due to the Mytomycin C wash from the HIPEC surgery.  I was just wondering when Steve received the news 4 months after his HIPEC that the cancer had spread to his liver do you know if his CEA was elevated? It seems as though the majority of people have an elevated CEA reading.  I know CEA readings aren't 100%, but so far in my mom's 3 year colon cancer journey her CEA levels are an excellent indicator of mestasis.

Thanks,

Julie

 

 

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Julie.  I believe Steve's CEA was 29 at the time the liver lesions were discovered.  Try not to worry.  Keep us updated!  Best of luck to you and Mom.

 

Chelsea

Dumbfounded's picture
Dumbfounded
Posts: 25
Joined: Sep 2013

I was diagnosed with Stage IV colon cancer in April 2013. I had the Hipec right after surgery to remove all cancer that could find. It was successful at this point in my opinion because even though I have had an allergic reaction to the oxiliplatin for chemotherapy, I am now only on Xeloda with Avastin introduced into it 2 weeks ago and my Oncologist says everything is going well. I have a scan scheduled for Wednesday to see if he is correct. The only problem I am experiencing right now is soreness in the back of my neck. 

thxmiker's picture
thxmiker
Posts: 1213
Joined: Oct 2010

UCSD's protocol was 8 weeks off of Chemo before HIPEC.  USC had told me at least 4 weeks after chemo before surgery.   The reason was internal bleeding can be bad if chemo is done to close to surgery.

 

I went in for surgery end of June 2013.   

 

Best Always,  mike

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

I had at least 4 weeks between chemo and HIPEC surgery.  At least 8 weeks off Avastin.  Then my surgeon made me wait 3 months before starting chemo again.  Wish I had started right away.  Definitely do the cimietidine and PSK after surgery. 

I know of one woman, she's not on this discussion board that had stage IV colon cancer had HIPEC as her first surgery and is NED 5 years later.  That's the only "cured" person I know of that had HIPEC.  I have had recurrances, but so far all in the peritoneum, although they were originally in the upper left quadrant, now down near the rectum and I've wondered if the HIPEC wash helped that.  Since, it's been over 4 years since I had HIPEC and I'm doing well, even with the recurrances.  Good luck to your dad, Traci

vinaykumar
Posts: 66
Joined: Dec 2012

thanks for the inputs evryone. this really helps me breath easy and focus on getting other things in order for the surgery.

 

In India ( thats where we stay ) , HIPEC is a new modality and the surgeon i have zeroed in on has done about 30 HIPEC , altough he has done abt 700 cytoreductions without HIPEC.

 

i am wondering  taking my dad to europe for HIPEC would be better ( the surgeons i contacted there have > 400 HIPEC experience)  , but i dont want get stuck in europe if his recovery is longer than the usual 4 weeks !!

Chelsea71
Posts: 1170
Joined: Sep 2012

The tricky part is the cytoreduction.  This is where you want a lot of talent and experience.  700 is a nice number.

LivinginNH's picture
LivinginNH
Posts: 1287
Joined: Apr 2010

 

HIPEC has at least a three month overall recovery time.  The four weeks that your doctor may have mentioned is only for the basic wound healing.  Your father won't be feeling like himself again for three or more months.  As Chelsea stated earlier, some people don't really recover for up to year.  This is major surgery, especially for someone that's on the older side of life.  Rick was only 43 yrs. old, and it kicked his butt.  I remember that it was a struggle for him one month after surgery to even walk to the end of our driveway to pick up the mail.  He was completely exhausted by the time he got back into the house.  By month four he was finally able to walk around the block and back.  I know that you're still planning to go headlong into this surgery, but you should at least tell him what he may be facing.

Good luck with it.

vinaykumar
Posts: 66
Joined: Dec 2012

thanks for the info , the doctor has indicated that my dad will be able to fly back 4-5 weeks after surgery. of course,it depends on the recovery , extent of surgery etc ,but thats the average of the 400 paitients he has operated on.

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

I had HIPEC and have had recurrances.  Glad I did it, but I have a very difficult time getting my HMO surgeon to agree to more surgery.  Seems the chemo wash makes the organs sticky and it can be tricky to go back in at a later date.  Just wanting you to know.

I live in southern CA and went to central CA for the surgery, flying home 11 days post-op.  I finished my recovery at home.  4 weeks post-HIPEC I was pulling up linoleoum in my new home.

Good luck to your dad.  I hope the surgery goes well.  Traci

thxmiker's picture
thxmiker
Posts: 1213
Joined: Oct 2010

Most Doctors want an eight week window from the last time one had conventional chemo to receiving HIPEC.   HIPEC is exceptionally strong and residual effects from previous chemo can be an issue.  Some more aggresive Docs will do HIPEC 4 weeks after chemo.  (It is not recomended.)

 

HIPEC is mot to be taken lightly. It is a very serious and risky procedure.  I was for it for me, because of the reoccurences I have had.  After surgery, I was not a good candidate for HIPEC, and it did not happen for me. At the same time, I am in a slight remission.  So, everything worked out for me.

 

We are sending our thoughts and prayers for your father's health! 

Best Always,  mike

 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

it worked very well for my perioneal disease, still is and over 12 months down the track.

I am still on the hipec waiting list, the lung rfa waiting, but my aggressive surgeon said go back to germany, keep on doing whats working so well for you.

prof morris has done 650 hipec's,  so my strategy was tace and removab to control minimal disease.

clearly I was blessed with an immediate and extreme immune response, many factors in this, but it might might be worth a try.

the my initial hipec alternative therapy took 10 weeks which was 3 course of removab, 3 tace peritoneam, liver, lymph nodes.

email me if any questions.

protecting immune function aka no chemo seems commonsense to me, but its a minority view here!

I think what makes all the differene is if you are a vaccine responder, this is known by analysing your hla sub types. this is clear for dendritic cell efficacy but not really analysed for trifunctional antibodies responsive. I suspect hla also explains my great removab response.

 

but this is all speculation on my part, but based on my clinical results.

email me if you want more details.

 

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